My son's liberation

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: doppler test Georgetown

Postby DeniseW » Mon May 10, 2010 12:05 pm

Stayfit wrote:Hello Denise I am from Pa met at Georgetown the day of your son's procedure lost your e-mail. I'll get doppler results tomorrow. What experience is there at Washington Hospital Center concerning CCSVI testing?


Hello,
I do remember you. Hope you are well. Our experience was that the tech at Washington Hospital Center (that did our son's first doppler) found significant blockage in his jugulars...but, the tech at Georgetown didn't. Since the venogram was done we now know that he did in fact have lots of narrowing in both jugulars and in his azygous vein. Not sure why the results were so different between the Hospitals. Was it the quality of the equipment...or the tech?? I've asked to be in the room tomorrow for the followup doppler to see how g.town's examine compares to the WHC examine. I haven't gotten the okay to be in the room yet...but, hoping they won't fight be on this. I'll post a followup after the visit and let everyone know if his veins remain open. Our guess is that they are still open because he has so much more energy etc.
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Re: health care coverage and CCSVI

Postby DeniseW » Mon May 10, 2010 12:37 pm

Stayfit wrote:The problem of getting treatment for CCSVI is relevant to the larger national discussion of Health Care Delivery in general. Although elected representative ostensibly write and implement legislation, who influences their decisions. Many folks here, have been raising the question of drug company's political influence because of there financial interest. And further raise 2 questions, if treating CCSVI is far less expensive than drug treatment and there have been so many examples of great results what is really holding back diagnosis and treatment? Dr. Zamboni spoke the other day of his love of science, seeking the truth and his desire to bringing people together. My desire, is to follow that path on the way to treatment and an improved life.


I do agree with you that the pharma industry has a lot of influence on our legislators, but I also think there are a lot of great doctors out there that will be more than willing to help MS patients as soon as the ongoing studies prove the CCSVI theory. As much as I believe in the CCSVI theory and I do believe it 100%...it is still a theory that needs to be tested in the medical society, and then, a safe treatment protocol has to be established. Even in my son's case..yes, he did have lots of narrowing in his major veins, and yes they have been opened, and yes he is feeling much better. Now we have to wait and see if they will remain open, and if they don't...no one really knows of a totally safe way to treat them. I've read that there is someone out there designing a stent that will not travel in veins, and I'm really hoping that's true and it will be on the market soon...but it isn't available right now.
Dr. Zamboni states in one of his interviews that his wife has been MS symptom free for more than 4 years now after her liberation, and I'm hoping I can say the same thing about my son in 4 years...and then 4 more years, and 4 more year...etc. etc. You have to hang in there, the answers are coming.
However...on the other hand, if I were in an unstable situation regarding my MS...I would take a very proactive approach and find a doctor willing to test and treat...even if I had to pay for it myself...even if I had to go overseas. That's just me and you may feel differently.
When I think about how fast this happened for our son...it's hard to believe...considering we only learned about CCSVI 5 months ago. I can't speak highly enough about his fabulous doctors!!
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Postby cheerleader » Mon May 10, 2010 4:57 pm

Denise--I hope you had a good Mother's Day yesterday...you deserve it!

it's stories like the one you've posted about your son that keep me coming back here and give me energy to keep fighting and connecting with doctors. An azygos vein that was so malformed and severe jugular reflux would have continued to harm his brain and spine.

It breaks my heart that everyone's child with MS is not able to be tested and treated. I hear from patients around the globe that know they have severe venous malformations, and yet are not able to be treated, because of IRB snafus or IRs being stopped or no doctors able to treat or other procedural problems.

If there is anything you can do, Denise, to take your son's story public...contact your local press, local TV, whatever you can do will help. These individual tales are adding up, one anecdote at a time.
thank you for considering this-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby DeniseW » Tue May 11, 2010 10:08 pm

cheerleader wrote:Denise--I hope you had a good Mother's Day yesterday...you deserve it!

it's stories like the one you've posted about your son that keep me coming back here and give me energy to keep fighting and connecting with doctors. An azygos vein that was so malformed and severe jugular reflux would have continued to harm his brain and spine.

It breaks my heart that everyone's child with MS is not able to be tested and treated. I hear from patients around the globe that know they have severe venous malformations, and yet are not able to be treated, because of IRB snafus or IRs being stopped or no doctors able to treat or other procedural problems.

If there is anything you can do, Denise, to take your son's story public...contact your local press, local TV, whatever you can do will help. These individual tales are adding up, one anecdote at a time.
thank you for considering this-
cheer


Hello Cheerleader
Thanks for the support, and yes I did have a wonderful Mother's Day.

I think that CCSVI is getting more press. Just today my son was at Dr. Neville's for a followup to his venogram and he told us that the reason he decided to "try" treating CCSVI was that he had read an article in a medical journal about CCSVI that was written by someone he looked up to. He also said that other doctors were approaching him asking if he would share his treatment plans with them so that they too could consider treating CCSVI. Dr. Neville also told us that he has been getting many request for treatment and that he would consider doing venograms on any patient that provides him with an order from their neuro.I don't believe it will be long before lots of doctors are on board. We all have to keep in mind that this is still experimental. Even though my son was lucky enough to be one of the first treated, and we are total believers in this liberation theory...there are still risks invloved, and no guarantees his veins will remain open or that this is a step towards a cure. There are questions that still need answers...like, does my son stop his MS medication now that his veins are open. There are risks to stopping medications too. Everyone needs to keep in mind that just because a doctor knows that veins are narrowed and twisted it doesn't mean that a doctor knows how to treat them. This is all so new to the medical establishment. It's amazing how little veins have been studied. But, at least they are studying them now!! If my son hadn't had symptoms of a vascular stenosis since he was a toddler and prior to the MS...we might have waited to see how the studies play out before seeking treatment.
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Postby cheerleader » Wed May 12, 2010 8:04 am

DeniseW wrote: There are questions that still need answers...like, does my son stop his MS medication now that his veins are open. There are risks to stopping medications too. Everyone needs to keep in mind that just because a doctor knows that veins are narrowed and twisted it doesn't mean that a doctor knows how to treat them. This is all so new to the medical establishment. It's amazing how little veins have been studied. But, at least they are studying them now!! If my son hadn't had symptoms of a vascular stenosis since he was a toddler and prior to the MS...we might have waited to see how the studies play out before seeking treatment.


Agree 100%, Denise...this is not a one-stop procedure, which is why I hope more patients like your son will be able to stay close to home. And I agree, it is AMAZING how little we know about the venous system, especially in relation to the arterial side. My Jeff lost his peripheral vision as a young man--he now sees with tunnel vision. No explanation was ever given by any doctor. He was 44 when he got an MS diagnosis, after years of issues and no answers. But if my son ever presents with vision problems...now we know where to go. Please keep us posted on your son, and consider doing an entry for him on the tracking thread. All info helps.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Trish317 » Wed May 12, 2010 9:54 am

Of course, there's the issue of anyone taking an approved medication for MS. Those are, generally, people with RR. Do they continue meds after the CCSVI liberation procedure, or not? Then there are the people with progressive forms of the disease where there is no medication that might help.

Obviously, if both types of the disease present with CCSVI, they should be treated. I would think, from a personal perspective, it would be up to the individual to continue or forego (even temporarily) any prescribed MS medication.

Couldn't there also be research designed around that? Liberate anyone with CCSVI and follow patients who continue on the CRAB drugs, as well as those who don't.

I'm sure greater minds than mine have come up with that idea.

When it comes to treating CCSVI, I keep coming back to the fact that MS should be taken out of the equation.
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Postby jackiejay » Wed May 12, 2010 10:09 am

a lot of the appeal of CCSVI treatment to me would be to be able to get off of the MS medication.....I'm speaking of the immune modulating drugs....if the autoimmune theory is incorrect as we are all starting to discover.....why would you need to stay on these drugs?....their proficiency rates are around 30% or so they say.....if you have MS and CCSVI and you are treated, would it not be healthier to get off of these drugs.....no one seems to know how they work anyways....I realize it is too early to do this yet but that is what I would hope would be the outcome of CCSVI treatment...
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Postby SofiaK » Fri Jun 11, 2010 10:09 am

I just got the CD of my Doppler test of my jugular veins. Apparently, I have an extra valve in my left jugular!

Does anyone know, can the liberation treatment still be done? How will this impact the treatment???

I appreciate all help. Thank you.
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Postby JCB » Fri Jun 11, 2010 10:37 am

I think the dream of all MS patients everywhere is to get off all the drugs we are pumping into our bodies. It is just common sense that you shouldn't be forcing your bodies immune system to do something that it is not designed to do. I think that is where trials and further research will come in. In the mean time get liberated and stay on your meds. What I don't understand is the waiting, and reluctance of the Medical field to test and treat vein stenosis. I am on waiting lists, but am getting sick of waiting.
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Postby mshusband » Fri Jun 11, 2010 10:44 am

JCB I'm not sure where you are from ... but if you are in the US ... you CAN find doctors willing to treat CCSVI ... in countries where the government controls medicine that'll probably be harder to do.

You just have to do some work and find a doctor to get involved.

The best bet is find a doctor at a teaching hospital/medical school ...

It's going to be available widely soon ... but if you're in the US ... you can find treatment ... and it's not that hard to do so to tell you the truth.
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Postby JCB » Fri Jun 11, 2010 10:52 am

Mshusband,

From the great state of 10,000 lakes, but no IR's willing to take the plunge. You would think Mayo would be all over this, but I have a very close connection (sibling - MD) attached to Mayo and they aren't touching it.
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extra valve

Postby Rosegirl » Sun Jun 13, 2010 8:30 am

Sophia -

Doctors are finding that it is common for MS patients to have problems with valves and/or flaps that impede the flow of blood. You need to deal with an IR (investigational radiologist) who knows how to diagnose and treat this.

For example, when the catheter is inserted, it will hold open valves, so valves that are simply stiff or incomplete might not be noticed without the right technique/equipment.

Not all CCSVI patients have blockages. Some have problems with valves or other abnormalities.

Dr. Simka in Poland found more than half of his patients had such problems.
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Postby SofiaK » Sun Jun 13, 2010 4:31 pm

WOW. Thanks Rosegirl. I guess I'm not alone.

I'm hoping to take my fatigue and make the very long drive to Dr Siskin who is an interventional radiologist in Albany, NY. Sure, someone else will drive of course.

I just hope the procedure can be done! :?

Sofia
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Postby lucky125 » Mon Jun 14, 2010 4:34 am

Just an FYI on valves an Georgetown:
Dr. Neville has seen many valves and is NOT treating them. They are not part of his protocol, which he is sticking to in order to write a paper.

It is the price we pay for being pioneers. Studies need to be done, but limitations of those goals can have a significant impact on our treatment.

Still wouldn't want to be waiting on the sidelines, but go in with eyes wide open!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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